I never realized just how fortunate I have been when it comes to my health insurance. My husband was in the Navy when I was diagnosed with Stage 4 Lymphoma. When the doctor said he wanted to do another surgery, the third in one month, I said I just could not do it unless I had someone with me. My husband was out to sea and would not be back for another month, my family was half way across the United States from me. By the next time I saw the doctor my mother was arriving the next day, so the doctor said "Good, I'll schedule your surgery." I had three surgeries in one month.
Within three years my husband was out of the Navy, I was working with insurance and had to fight just about everyone to get my chemo paid for, even though they said they would pay for it. Before we were divorced my husband got a job with insurance that had a bad reputation, but I said OK put me on it. By the end of the year his company was going to drop it and pick up another insurance. I could either pay for it myself or go with the new company. I had to have surgery in the short time I was with Northern California Kaiser Permanente and fell in love and said I would pay for it. The doctors are all salaried and everything is on one campus, there are multiple campuses in Northern CA all now on the same computer system so if one campus does not have what I need I can go to another campus and they can pull up my record and know more about me than I know.
It would be wonderful if everyone could have the same type of insurance that I have, no doctor who you see in the hospital is "out of plan". If you do not like your doctor you can see someone else and going to another campus is okay. I am seen on three different campuses, one is an hour away but that is where the specialist is so I have to go there for my annual check up. Kaiser does not do cosmetic surgery, except for medical reasons, that you have to go off campus for and pay for yourself.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hello @paulfj067 -- Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.
@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?
Hi @suzylulu -- I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.
Hope some others that have tried acupuncture can share their experience here.
Hi @suzylulu -- I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.
Hope some others that have tried acupuncture can share their experience here.
Hi @suzylulu, I have found acupuncture to be the most effective treatment so far for my neuropathy symptoms. It hasn't eliminated them but it has made a difference in their severity/frequency, and doesn't blindside you with side effects like so many prescription meds. The down side is the potential expense and fitting these appointments in along with all the others... am currently in between sessions but look forward to getting back to it again soon. Good luck!
I had fifteen sessions of acupuncture with a Chinese MD and had no results from them. It was an interesting procedure and he had great credentials but no results. My insurance paid 80% of the costs. I have also recently tried medical marijuana under the direction of a pharmaceutical company as is the method in my state, Minnesota. Unfortunately side effects occurred before I had any pain relief from the PN. The company has other levels of cannabis that I could try but after the many meds I have tried and the above procedures I have decided to live with my problem. I have just purchased a power chair (scooter type) which makes it easier for me to be about the senior residence where I live. Medicare does pay for such a chair but I did not qualify but it is worth checking into.
Hello @paulfj067 -- Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.
@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?
Good Morning from Texas. Beautiful morning. Please take what I say not as bragging or complaining. I've certainly done more than my share of that. I have dealt with neuropothy for almost 20+ years. It started in the bottom of my feet, hot and burning sensation and over the years it has creeped up to my knees and in my hands. I started taking gabapentin 200mg once a day,and have advanced to 800mg +50mg of Tramedol every six hrs. I have tried not taking the tramedol, and have found nothing OTC that works as well. I recently have tried to lessen the amount of gabapentin and again I paid dearly for it. The pain is almost unbearable. I have severe spinal stenosis and have a spine stimulator and it helps a great deal. I have a pace maker, heart surgery, have had 2 neck surgeries due to bone spurs. so pain has been a part of my everyday lving. And I am so grateful to be ALIVE!
It is so difficult to believe that our Medical institutions have not come up with better ways to treat this PN. I have talked to, emailed, read on this site about others who are suffering with this and the number seems to just keep growing. Is it our environment, eating,living habits that have created this? In this day of medical breaktroughs there has to be an answer.
Anyone, please share with me.
Peace that passes understanding to all......JJ
Hi @suzylulu -- I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.
Hope some others that have tried acupuncture can share their experience here.
Hello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.
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I never realized just how fortunate I have been when it comes to my health insurance. My husband was in the Navy when I was diagnosed with Stage 4 Lymphoma. When the doctor said he wanted to do another surgery, the third in one month, I said I just could not do it unless I had someone with me. My husband was out to sea and would not be back for another month, my family was half way across the United States from me. By the next time I saw the doctor my mother was arriving the next day, so the doctor said "Good, I'll schedule your surgery." I had three surgeries in one month.
Within three years my husband was out of the Navy, I was working with insurance and had to fight just about everyone to get my chemo paid for, even though they said they would pay for it. Before we were divorced my husband got a job with insurance that had a bad reputation, but I said OK put me on it. By the end of the year his company was going to drop it and pick up another insurance. I could either pay for it myself or go with the new company. I had to have surgery in the short time I was with Northern California Kaiser Permanente and fell in love and said I would pay for it. The doctors are all salaried and everything is on one campus, there are multiple campuses in Northern CA all now on the same computer system so if one campus does not have what I need I can go to another campus and they can pull up my record and know more about me than I know.
It would be wonderful if everyone could have the same type of insurance that I have, no doctor who you see in the hospital is "out of plan". If you do not like your doctor you can see someone else and going to another campus is okay. I am seen on three different campuses, one is an hour away but that is where the specialist is so I have to go there for my annual check up. Kaiser does not do cosmetic surgery, except for medical reasons, that you have to go off campus for and pay for yourself.
mlmcg
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1 ReactionHi, I have been dealing with it for the last 5 years.
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1 ReactionHello @paulfj067 -- Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.
@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?
John
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2 ReactionsHas anyone tried acupuncture for neuropathy.. I mainly have numbness in feet and ankles like you do John.
Hi @suzylulu -- I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.
Hope some others that have tried acupuncture can share their experience here.
John
Thanks, John. I have made an appointment and will let you know.
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2 ReactionsHi @suzylulu, I have found acupuncture to be the most effective treatment so far for my neuropathy symptoms. It hasn't eliminated them but it has made a difference in their severity/frequency, and doesn't blindside you with side effects like so many prescription meds. The down side is the potential expense and fitting these appointments in along with all the others... am currently in between sessions but look forward to getting back to it again soon. Good luck!
-
Like -
Helpful -
Hug
2 ReactionsI had fifteen sessions of acupuncture with a Chinese MD and had no results from them. It was an interesting procedure and he had great credentials but no results. My insurance paid 80% of the costs. I have also recently tried medical marijuana under the direction of a pharmaceutical company as is the method in my state, Minnesota. Unfortunately side effects occurred before I had any pain relief from the PN. The company has other levels of cannabis that I could try but after the many meds I have tried and the above procedures I have decided to live with my problem. I have just purchased a power chair (scooter type) which makes it easier for me to be about the senior residence where I live. Medicare does pay for such a chair but I did not qualify but it is worth checking into.
-
Like -
Helpful -
Hug
1 ReactionGood Morning from Texas. Beautiful morning. Please take what I say not as bragging or complaining. I've certainly done more than my share of that. I have dealt with neuropothy for almost 20+ years. It started in the bottom of my feet, hot and burning sensation and over the years it has creeped up to my knees and in my hands. I started taking gabapentin 200mg once a day,and have advanced to 800mg +50mg of Tramedol every six hrs. I have tried not taking the tramedol, and have found nothing OTC that works as well. I recently have tried to lessen the amount of gabapentin and again I paid dearly for it. The pain is almost unbearable. I have severe spinal stenosis and have a spine stimulator and it helps a great deal. I have a pace maker, heart surgery, have had 2 neck surgeries due to bone spurs. so pain has been a part of my everyday lving. And I am so grateful to be ALIVE!
It is so difficult to believe that our Medical institutions have not come up with better ways to treat this PN. I have talked to, emailed, read on this site about others who are suffering with this and the number seems to just keep growing. Is it our environment, eating,living habits that have created this? In this day of medical breaktroughs there has to be an answer.
Anyone, please share with me.
Peace that passes understanding to all......JJ
-
Like -
Helpful -
Hug
3 ReactionsHello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.
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Like -
Helpful -
Hug
1 Reaction